Out of the overflow of the heart, the mouth speaks.

Our family lost a dear woman on Monday night. A long time ago, we called her Grandmother Nancy – but when Jonas came along as a young talker, he renamed her “Yaya” out of the clear blue sky. We don’t know where he came up with that moniker, but it stuck and pretty soon we all called her Yaya.

About a month ago, Yaya was diagnosed with AML – acute myeloid leukemia – about a month ago. This past Friday, she was hospitalized with what appeared to be pneumonia. Monday night, she passed away. While it was sudden, it wasn’t totally unexpected because of this form of leukemia.

We are so sad that she’s gone. Last night when I was lying in bed, I remembered one year (was it Thanksgiving? or Christmas time?) that Yaya had found a recipe for Chex mix and she wanted to try it out. Donna and Missy and I were all there – and maybe Laura and Andrea? – and we had all the ingredients spread out all over the kitchen counters while the guys were watching football. Karl made some joking comments about how it would have been cheaper to just buy a bag of pre-made Chex mix, and Yaya told him, “We are not making Chex mix here! We are making memories.” She was so right. 😉

Her funeral will be this Friday in Cedartown, Georgia. You can view her obituary online by clicking here.

We got a call Wednesday morning (9/28/11) from our midwife – one of the tests on the newborn screening came back abnormal, and the lab in Indiana wanted our pediatrician’s information. Urgently. I gave his name and number to Michelle, who called the lab, who faxed Dr Phillips’ office, who called me about two hours later.

The nurse who called wanted us to come in as soon as we could get across town. She didn’t tell me on the phone which test had been flagged; she just said that the doctor would talk to me when I came in.

When I got there, we weighed Abigail (who was up to 7 lbs, 4 oz…. a gain of one ounce per day since her first check-up). Dr Phillips came in the room and didn’t immediately tell me what was going on. I could see in his eyes that he had something bad to say – and when he asked if Chris was at work or at home (he was at home with Jonas & Susannah), I knew it wasn’t just friendly conversation.

After the nurse did Abigail’s repeat heelstick, Dr Phillips called Chris and put him on speakerphone so we could both hear the news together.

Abigail’s screening came back “elevated” for organic acid disorders. This is a whole subset of metabolic disorders – where a baby is missing an enzyme (I think) that is normally used to process the branch organic acids they consume. Babies who have one of these disorders need to go on a very limited, very specialized, lifelong diet with some special supplements. Without treatment, their prognosis is…. BAD. Let’s just say BAD.

(If you want to read about these disorders in more detail, there is reliable information available at the March of Dimes. At that page, the “organic acid metabolic disorders” begin about halfway down the page. I’ve only skimmed it, because, well, it’s pretty scary stuff. And I need to be able to function for the rest of the week.)

So after we talked a bit about what this screening meant, the nurse came back in and did Abigail’s urine sample. The only good thing about that was that she was really good at her job – the catheter was in and out in the blink of an eye. Then I got Abigail dressed and we headed across the street to the hospital, where we waited a bit at the lab. They drew a vial of blood, and the blood & urine were sent off to a lab (I think they said it had to go to Duke — apparently only a few labs in the country do the highly specialized workup required to pinpoint which organic acid disorder this might be).

It will be about a week until we get the results.

Now the good news is as follows:

this is a screening test. As such, it casts a wide net in order to not miss any babies who really have these conditions – and as such, it does return a number of false positives. Many babies whose initial screenings are flagged go on to have normal test results during a repeat screen.

Abigail looks great – she has been nursing well, having more awake time each day, is responsive and interactive when she is awake, and has normal ‘output’ (number of pees & poos). Babies who have these disorders are usually very sick, very quickly.

But the bad news is:

we don’t know her exact number, but our pediatrician called the geneticist at the lab in Indiana which processed her screening test. He told Dr Phillips that “the last three babies I had with number this elevated did turn out to have the disorder.” So even though we don’t know the normal range or how high her blood test was, that doesn’t sound good.

Some babies who have these disorders do appear normal for a while and then suddenly get sick. So even though Abigail’s current baby behaviors all seem good and reassuring – there’s a chance that there could still be this underlying condition.

So, we wait. And we left Dr. Phillips with the warning that if Abigail starts sleeping more, if we have to wake her to feed her, if she’s hard to rouse, if her diapers decrease, or if she becomes lethargic or has lower muscle tone, we need to go straight to the children’s hospital in Louisville. That’s a little scary.

Please pray for us to have peace and patience while we wait, and pray that Abigail will continue to be healthy and strong. We know that whatever the outcome of this test, God has our future in His hands.

Friday night, we put the kids to bed and Chris headed off to the mall to look for some new dress clothes for work. I settled down to watch some DVR’d shows (Next Food Network Star, anyone!?) and then I heard Jonas at the top of the stairs. “MOM!?” I could hear the wavering tears in his voice. I bounded up the steps as fast as my pregnant self could go. When I got to the landing, Jonas said, “I have to tell you something bad and sad that happened!” His eyes were filled with tears.

“I swallowed the Mighty Bean.”

Ah, Mighty Beanz. I had never heard of this toy a few months ago – but when we went to visit my parents in July, my mom had found a Marvel Universe 4-pack of Mighty Beanz. (The other characters in Jonas’ pack were Nick Fury, Doc Ock, and Ironman’s buddy, James Rhodes.) They are little plastic, pill-shaped, doohickeys with a metal ball bearing inside. What are they for? Beats me. Apparently they are fun to make stand up, spin around, and wobble from side to side. It must be a boy thing.

Anyway. So I asked Jonas how this happened. He was laying on his back in bed, holding the Human Torch bean above his head, flipping it this way and that. It slipped out of his fingers and fell into his mouth. “I was choking, Mom! And I couldn’t cough it, so I swallowed it!” He started crying again.

“Does it hurt? Are you hurting?”

“No.”

“Why are you crying?”

“Because I swallowed it! And now it’s gone forever!”

I brought Jonas downstairs with me, and hopped online to Google Mighty Beanz + magnet… Mighty Beanz + toxic… Mighty Beanz + child swallowed… and every other pertinent combination I could think of. I also called our friend Marin, a pediatrician who graduated from NSU-COM the year before Chris (and her husband, Kyle). Then I called Chris; I felt so bad for interrupting his shopping trip!

He did a quick call to Dr. Chris Glaser, one of his colleagues at OVSS, and they decided it was probably fine to wait and see what happened until Monday or Tuesday. In the meantime, we’d keep a close eye for belly pain, fever, change of appetite or bowel movements. Oh, and speaking of BMs… we would have to (ahem) inspect those for the next few days.

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Saturday and Sunday went by without a problem, although Sunday evening Jonas started having verrrrrrry loose movements. When he woke up Monday morning and had four watery BMs, including one with a “sudden urge” that caught him off guard (didn’t quite make it to the toilet in time… poor kid!) – well, I started to feel a little more concerned.

Chris and Dr. Glaser faxed in an order for an x-ray, so after schoolwork for the morning we went to an outpatient imaging office. On the way over, I got a teensy bit turned around. When we finally pulled into the right parking lot, Jonas asked, “So is this it?”

“Yes,” I replied, with a little chagrin, “we found it.”

“Excellent!” He crowed. “Or should I say… XRAYellent!”

Leave it to Jonas to crack me up when he’s sitting in the backseat with plastic in his belly. Hee! 🙂

He was quite a character with the x-ray tech, too. Susannah and I obviously couldn’t go into the radiology suite with him, so we waited on the little sofa just outside. I could hear the tech laughing and chattering, and then she came to get me when he was finished. (Chris & Glaser had asked that we wait there while they read the films, just in case they needed a second view taken.) “He’s so smart!” She said she asked him if he knew why they were taking pictures today, and he told her, “Yep. I swallowed a Mighty Bean. It’s in my colon.” She widened her eyes at me. “Most five-year-olds don’t know that word!”

The bean was still in his stomach, actually, so Chris texted me to come over to his office. While the docs were conferring, Chris’ intial reaction was to take it out. Glaser felt like 98% of foreign objects pass on their own; better to leave it alone. Another doctor in their group, Chad Statton, walked by and they flagged him down to get his response. “Oh, I’d leave it alone,” he said. One of the guys asked him, “Well, what if that said, J Statton [his 14-month-old son]instead of J Nebel at the top?” Chad grinned. “I’d take it out.” When I finally got there, they relayed all of this to me, and we all decided that since it wasn’t causing any pain or problems, we would just leave it alone. They also felt pretty strongly that the diarrhea Jonas had experienced that morning was probably unrelated to the presence of the bean.

I brought the kids home while Chris went to the surgery center. (It was his first day of work; did I mention that?) We ate lunch; I put Susannah down for a nap. I checked on Jonas as I left her room – he usually has quiet time while she naps. He was all wrapped up in his sheets on his bed, and a few minutes later he was asleep! Very rare these days. I ate my lunch and got back to that Next Food Network Star episode I had started three days before! But I was interrupted again…

by Jonas screaming. I seriously booked it up the stairs this time. He was standing in the hall, clutching the right side of his belly, tears streaming down his cheeks, and just wailing. I grabbed him to me, trying to figure out what was wrong. He just yelled and cried. I told him I was going to call Daddy – “NO!” he shrieked. “You don’t want me to call Daddy?” I was bewildered. “NO! Don’t WALK AWAY! You have to fix me! You have to make it better! IT HURTS!” Oy, mamas, can I tell you how awful I felt? I didn’t know how to fix it, how to make it better. My heart was breaking. Plus – I was a little bit scared that the bean had traveled with his lunch and was now exploding in his small intestine, or something.

I left Chris a message and got Jonas downstairs. We figured out that laying on his right side, with a warm rice sock, helped a little bit. He stopped screaming. My heartrate relaxed a little bit. Chris texted me:

He got home shortly after, and we started putting a few things in a bag to take to the hospital. Chris left at 3:30 to help Dr. Glaser with a hernia repair, and we left at 4:20 to register in pre-op. Jonas got a bracelet (which he complained was “for babies” and which made Susannah jealous because she wanted one!) and a teddy bear. He hopped up onto the hospital bed and gave the nurses his name and birthdate; they got his pulse ox level and blood pressure and temperature. We brought the portable DVD players with us (thank God, and thank Mimi, for those devices!) and Susannah sat in her little stroller with the movie Tangled and a snack.

An anesthesiologist came by to talk with us, and they gave Jonas a little dose of Versed to make him loopy. A portable X-ray machine came by to get a quick image and make sure the bean was still in his stomach (it was). Dr. Glaser came by to say we were all ready to go – so Susannah and I gave Jonas a kiss, and Chris and Jonas headed off to the OR.

Jonas did really well – he breathed through the “cherry mask” and fell asleep, they put in the IV, and started the scope. I got a text that he was asleep, and twenty minutes later another one that said, “It’s out! I took pics.”

Not long after that, I could hear him down the hall in Recovery. Waking up from the Versed was rough – it was a lot like a night terror. He was awake, his eyes were open, but he really couldn’t process what we were saying to him or communicate anything to us. A sweet nurse offered to stay near Susannah so I could go down the hall with Jonas and Chris. We went back down to the pre/post-op room shortly, and Jonas started being able to talk to us. He held up his gauze-wrapped hand (the gauze was covering the IV) and told us, “Take this off, I want this off!” The nurses explained that after he’d had some liquids by mouth and kept it down, they would be able to take it off. He sipped some water and some Gatorade, and she went to find her scissors.

Getting the IV out was a big help. He started to calm down, and we got him situated on the bed and I laid beside him. He finally stopped crying and shrieking, and asked for a popsicle. (The nurses brought him one – along with a cup of sherbet for Susannah! Between movies, snacks, and ice cream, she didn’t want to leave the hospital!) After a few bites of the popsicles, he said, “Mama?…. I want to go HOME.” We had to wait a little bit, so they could be sure he kept the popsicle down, but shortly they brought the discharge paperwork. Jonas was given the option to have Chris carry him out or to ride in a wheelchair, and he picked the wheels.

We got home around 8:00 p.m. and the three of us non-drugged-Nebels had a quick nosh from Wendy’s (Chris stopped on his way home, since we’d been in separate cars). Jonas passed out on the couch with a cup of Gatorade at his side. And boy, was I glad to see THAT day end.

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Tuesday, Jonas had a mild sore throat, but another popsicle and several bottles of Gatorade appeased him. (Gatorade is a real treat around here, so he felt super-special to be able to guzzle it all day.) My mom and dad sent him a special delivery from a local florist – a teddy bear with three big Mylar balloons (and a little bear and one balloon came for Susannah). That cheered him up, too!

So now we’re getting back to normal – Chris is settling in to his work routine (he has office hours, blocks of time at the hospital, and blocks at the surgery center) and Jonas and I are back to school again. Susannah is her usual, crazy self. If you’re the praying type, you can pray for less excitement and drama around here from now on, okay? Thanks!

I have no idea what to expect when I go use this in a few minutes, but it seems like everyone in the world has hopped on the neti pot bandwagon and insists that I get one for my sinus pain and congestion (which has lingered, even though my other symptoms are gone – other than the cough).

Oh, the joys. Hacking and wheezing and feeling like I’d been hit by a truck. This past week has been rather miserable, really. It all started last Friday, when I had a bit of a sore throat. It worsened on Saturday, and then on Sunday my symptoms grew to include head congestion, runny nose, and feeling more lethargic. Did I mention Chris was on-call all weekend and there was no food in the house? Yeah, that part was fully awesome.

I woke up Monday morning with all-over achiness and pain and pressure in my chest. I had a new hacking cough that left me feeling like my chest was in a vise and like I was breathing in sharp needles. Not fun. I really don’t know how we made it through Monday – I’d stagger into the kitchen to fix a meal or snack for the kids and then stagger back to bed, where I played endless Disney movies and let Jonas & Susannah run around creating general havoc. As long as no one was bleeding, I didn’t care.

Monday night, Chris told me I should be taking plain Sudafed and I said we didn’t have any. “Well, you should go get some tomorrow.” And thus began my meltdown. Tired, sick, cranky, pregnant & hormonal, caring for two kids, and watching the laundry and kitchen begin to overflow… now go get my own medicine? It was just too much.

Tuesday morning, my sweet stepmother-in-law called to see how I was feeling. She said she could “hear it in my voice” that I was “about to have a breakdown!” (lol. I was pretty upset.) So she offered to head in to work that morning and ask for the rest of week off! The rest of Tuesday, I still physically felt awful — but knowing help was on the way made me feel much less stressed out about it.

She arrived on Wednesday, and set right in with a load of dishes and a load of laundry, reading books with Jonas and playing with Susannah. It was a great couple of days – even though I didn’t spend the entire day sleeping in bed, I was able to basically rest and take my medicine and let her handle most everything else. (Except Susannah’s bedtime, she won’t accept anyone but Mama for that still.)

Friday I was finally feeling well enough to run a few errands, so we went together to Target (Jonas had a friend’s birthday party coming up and we needed to pick out a gift) and to Hand-Me-Downs (because you never know what you’ll find – I got maternity pants, shorts, and a dress for under $15 altogether!). After we put the kids down for naps, I went to the produce co-op and got to stock up without little people underfoot ;-).

Today Nonna headed back home, and I’m settling back into my routine of housework and kid needs. I’m just sooooo thankful she was able (and willing!) to come up here and help. It’s the kind of thing you’d never ASK someone to do, but when they offer it’s so touching. That’s love, you know? I’m still coughing, but from what I’ve learned about bronchitis, that’s pretty common. I’ll probably have a lingering cough for a couple of weeks even though all my other symptoms have resolved. But considering how awful I felt a few days ago, I can handle that!

My mom is in remission! My heart is so full. The odds were not with us on this – but our God certainly has been with us every step of the way. She still has to have bloodwork and scans next month, and then repeat tests every three months, but we’ll take it. Just knowing that she’s okay for now is AMAZING!

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“Then Job replied to the Lord, ‘I know that you can do all things; no plan of yours can be thwarted.'” Job 42:1-2

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“Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.” Jeremiah 32:17

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“Jesus looked at them and said, ‘With man this is impossible, but with God all things are possible.'” Matthew 19:26

This week is going to try my patience. My nerves. My mothering abilities AND my driving abilities. For this week, my friends, I’m going to be driving from Elsmere to Calhoun to Doraville to Thomasville to Midway to Decatur to Elsmere. In seven days.

Tomorrow morning we’ll head out early, put in at least six hours on the road, then make a layover in Calhoun to see Mimi and Aunt Andrea (who’s been stuck at college the last few times we’ve blown through town) for a brief pit stop. Then we’ll buckle back up and drive another two hours to my brother’s house. Unna Jay-jase and Shay-ray (in Susannah-speak) have graciously opened their home to us for an overnight – and we’re really excited about seeing them & Dylan again.

Monday morning, we hit the road again and head south for Thomasville, where my Grand-Maxwells will meet Susannah for the first time! (Ack. Feeling a little guilty that she’s a few months shy of TWO and I haven’t taken her down there yet.) I am already anticipating that leg of the trip, actually… I’ve been pulling into that driveway, roadweary and worn, at least once a year or once-every-couple-years for my entire existence. There is nothing quite like coming home to my Grandmama’s house.

We’ll head out Tuesday afternoon for Midway. My mom’s chemo schedule has changed, so we will likely be taking her to Savannah for her appointments on Wednesday and Thursday (glad I planned at least a *few* days to stay and help out). Then we’ll pack up again on Friday morning.

That afternoon, we should cruise into Decatur to see my dear friend Holly. We saw her back around Christmas, but it has been awhile and I’m looking forward to an evening of our nonstop girl chatter. We can seriously cram more words into any given minute than seems humanly possible.

Saturday morning I will probably feel more like kicking my car than driving it… but we will once again head ’em up and move ’em out. Destination: home. Chris will be back from D.C. and off work, so at least I’ll have that to motivate me on the drive back. When we arrive here, I fully plan on giving him a quick kiss, handing over both kids, and going to sleep for at least six hours. (I think I’ll deserve it, don’t you?) At that point, I might feel somewhat human again.

We rolled into Midway on Tuesday, expecting that my mom would start chemo the next day. There was some confusion or miscommunication with her doctor and his office staff/schedulers, though, so she actually had her first treatment on Thursday.

She got several “extras” first (fluids, anti-nausea meds, a corticosteroid) and then an IV each of carboplatin and taxotere. We were all really thrilled with how well she has tolerated these drugs! The first day after chemo she felt pretty great – she had enough energy to fold a load of towels and point & direct me in re-organizing a couple of pantry shelves that were getting on her nerves. 😉 Day two and three found her much more tired, which is to be expected, and she has started having some nausea – but she says it’s really not the sensation that she’s going to throw up, it’s more like vertigo or seasickness when she moves around.

It’s been a good trip. I’ve been able to do quite a few things for Mom (I’ve made two meatloaves! Chris said, “Every time I talk to you I think you’re making meatloaf!” LOL – hey, if she’s hungry for meatloaf & will eat it, I’ll gladly make her a dozen!)…. some cooking, some light cleaning, a plenty of organzing. Her “catalog basket” was all out of order — she keeps them alphabetized, for Pete’s sake! — and she wanted to refresh the greeting cards that are on display in the living room since so many new ones had arrived. So we’ve done those little projects, and I’ve driven her into Hinesville for a couple of doctor’s appointments, and we’ve just had nice relaxing time to chat.

The kids have been loving it, too. Our last trip ended up being much longer than I’d anticipated and they started getting restless toward the last few days. This time I brought a bag of crafts and diversions, which was good. Plus, Mom wasn’t in the hospital this time, so they have been able to see her and Dad each day 😉 My dad took them out to dig up sweet potatoes on Sunday afternoon — what a hoot! They were both COVERED in sandy soil when they came inside – Susannah even had grit in her ears. Jonas had his hands deep in the dirt and sighed, “I *love* being at this house.” How precious to hear that.

My brother Jason and his wife Sharon came in late Friday night and stayed through Sunday morning. Susannah started calling him “Unna Jay-jase” and didn’t quite manage a name for Aunt Sharon, but she did warm up to her compared to our last meeting with them. Of course, Jonas loves them both to pieces and was quickly jumping all over Jason, playing shooting games with him, and talking about Ironman, Spiderman, and Batman until they were blue in the face.

On Sunday, Mom wasn’t feeling up to heading into town for church, so Dad went early for both hours and the kids and I followed for worship service. Jonas & Susannah really love seeing Granddaddy up in the pulpit. When it’s time to pray, Susannah shouts out, “AMEN!” before they get started, and when Granddaddy starts preaching, she hollers, “Mo’ Jesus!” (This kid has soul, what can I say?) Jonas even left the service to go to Children’s Church.

She’ll have her next chemotherapy session on October 1st, so I’ll probably plan to come down again the week after that.

Hey, guess what!? It’s my sweet husband’s 31st birthday! Lucky me, he didn’t mind missing us for a few days… Lucky him, he gets to celebrate with some of the guys from work tonight AND again with us when we get home! 🙂

Mom and Dad left for Savannah around 10:00 a.m. I baked a meatloaf for tonight’s dinner (at least for the kids, the adults’ status is still unknown!) and started some laundry, got bags put together for me in the waiting room and for Mom in her hospital room post-op, made lunch, nursed Susannah and put her down, played a few minutes of trains with Jonas and put him down for “rest time,” and picked up some of the hurricane of toys.

Ironically, the tidiest the living room has been in three days is NOW, when Mom’s not sitting on the sofa to appreciate it! Hopefully I’ll get it equally as clean (or better!) before she’s released from the hospital in a few days. 😉

Mom’s neighbor Rachel is coming over in a few minutes with her daughter Addison. When they arrive, I’m off to the hospital. I’m a little nervous about the timing — I will need to head back down here right during rush hour to feed my kids dinner and nurse Susannah down for the night (5:30ish bedtime for her) and then it’s 45 minutes back up to the hospital… so if they start Mom’s procedure ‘on time’ at 1:00, that might put me away from the waiting room at the end. Which is exactly what I want to be there for, to be by Dad’s side as we get the debriefing from Dr Burke. {Sigh} Praying, praying, praying. Mom keeps telling us it’s all in God’s hands, and she’s right.

I don’t have a swell smartphone, so no updates from me until either late tonight or first thing tomorrow.

Welcome!

I'm writing my first novel, mothering three kids, and loving one husband. I blog because I'm too loquacious for my own good. My verbal overflow ends up here. My life story is on top and 11 years of archives are below. If you have a few words to spare, I'd love to hear from you - drop me a comment!